Musings on Mesothelioma

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“Umm, I’m having a bad trip. I ate part of a pot cookie.” Dear God the humiliation. The nurse lowered her head and squinted at me over her glasses. “And I have cancer!” I blurted out.

“Please take a seat over there,” she said pointing.

I sat down in the waiting room, which on a Friday night was hopping like a club. My dad, who had accompanied me, took a seat next to me. If I remember correctly I think he was reading The New Yorker, which he’d brought with him from home.

Feeling paranoid from the weed, I decided I needed to “lay low,” so I slithered down in my chair, the lowest I could go. My dad peered down at me out of the corner of his eyes; no doubt he was counting the minutes until my partner arrived to take over babysitting. I tried sneaking a peak at the others sitting around me; they looked like a pretty rough crowd.

“Dear God, Goddess and Universe: I’m having a bad trip and I’m surrounded by sketchiness. Can you please help? Thank you.”

My partner arrived, greeting my dad as if nothing the least bit strange was transpiring. My dad wished me luck – like I was about to write an exam – then left. Soon after I was sitting with my partner at a nurse’s desk as she took my vitals. I explained that I had been eating the cookie, (baked by a well-meaning friend), in an effort to soothe my anxiety enough so that I could eat a proper dinner. Since my recent cancer diagnosis I was having great difficulty eating and had already lost seven pounds.

“I had one bite and it tasted awful, like poison. But nothing happened so I took another bite.” The nurse looked at me, as if to say, “don’t you know anything?”

“Then I was in the bathroom for a long time, re-arranging things and looking at my pores.” I’m pretty sure the nurse was silently judging me at this point.

I continued, “and I felt good, but then I started freaking out…” I trailed off.

As if by magic, I was suddenly presented with a cardboard bowl and I barfed up some banana. I tried throwing up daintily – I mean despite this horror I was still a lady.

The decision was made that I would “ride out my bad trip,” on a stretcher in the waiting room, positioned a bit off to the side. I lay down feeling at once very safe and very exposed. I babbled to my partner, clutching him at times as if I were in grave danger.

“Am I seeing what I think I’m seeing?” I asked him. The waiting room had suddenly become an episode of Law & Order, with two belligerent women handcuffed to their respective stretchers; police officers standing nearby. I wondered if the women were high on drugs too. “My God,” I lamented to myself, “look at the depths to which I’ve sunk. I’m on drugs and hanging out with criminals.”

Several hours later, no longer tripping and back at home cuddled up with my dog Leroy, I reflected on one of life’s most important rules:

When eating edibles, especially homemade edibles, refrain from acting like The Cookie Monster.

Take one bite and wait. Check your pores, re-arrange stuff, do whatever you want, but do NOT take a second bite right away.

Back in April I wrote a post about having so many flowers in my hospital room that it started to look like a funeral parlor. If you have a loved one battling a serious illness, consider buying one of these non-flower gifts to lift their spirits and brighten up their hospital room:

One of Emily Mcdowell’s amazing Empathy Cards:

Add some razzle-dazzle with this fabulous gold planter from the Oh Joy! CollectionforTarget. Btw, I own this ladyface planter and she makes me so happy! If you really want to give flowers, place a colorful orchid inside, or fill it with hospital necessities: lip balm, facial wipes, sleep mask, earplugs and candy (if they’re able/allowed to eat it).

If the patient is in the hospital any longer than a week, a colorful lightweight blanket is perfect. When I was in the hospital I had a bright red blanket, it was cozy and it helped to make my room feel less institutional/jail-like:

Indigo sells this blanket in several colors:

A sleep mask makes a great gift for both men and women. Trying to sleep in the hospital – with the God awful hospital lights blaring at all hours – is frustrating as hell! Here is my partner sporting a handmade mask that I bought in downtown Los Angeles (LOL!):

More conventional, but no less colorful sleep masks, are available at many drugstores, Bed Bath & Beyond, large bookstores, Amazon, Sephora...💤💤💤

Finally, a framed photo of your beloved pet is a wonderful idea for a hospital room. When I was trapped in the hospital for two months, my old dog walker brought be a framed photo of my precious dog Leroy. Seeing his face each day kept me going; I knew I had to focus on getting better so that I could see him again.❤️🐾❤️

“Let’s have you pee in a bed pan today!” My nurse exclaimed with an air of excitement, like we were about to go see our favorite band.

I had been in the hospital for almost four weeks, (to treat Peritoneal Mesothelioma, a rare cancer), peeing through a catheter the entire time. I was game to try going on my own, but I was weak and wasn’t sure I would have the strength to pull myself up on the bed. My nurse took out my catheter then helped me into an awkward position, crouched above a cardboard pan.

The pan looked like a larger version of those biodegradable herb containers; my vagina an alien spacecraft hovering above a brown pebbled earth.

“I’ll give you some privacy,” said my nurse, leaving the room.

I looked out the window at the falling snow. No urine was exiting my body. “I command you to pee!” I said in a theatrical voice to an empty room. Nada. Not a drop. I was sweating and wanted to lie down, the position required too much strength to hold.

The succulent-crystal gurus say, “Ask The Universe – with love and gratitude – for what you need. Then visualize having what you need – and poof! – you will manifest it.” So I asked the universe to help me pee, in what I hoped was a loving and grateful manner. Then I visualized a long river-like flow of urine exiting my body – swoosh! I paused, ears tilted, in full manifestation mode. Nothing. Maybe the universe was busy helping people with more serious problems, like those living in camps in war torn countries. I couldn’t blame the universe, I’d do the same thing if I had magical powers & everyone was hounding me for help.

I was sure I was due for another blast of Hydromorphone. After two surgeries and HIPEC, (hot chemo poured in the abdomen and swished around), I was ablaze with pain. I buzzed the nurse’s station:

“Hi. I can’t pee. Nothing is coming out. Also, I think I’m due for more painkillers.” My nurse responded, “be patient, keep trying, it’ll come. And no, you’re not due for more pain meds yet.”

I stared gloomily at my crotch. “I know you’re in there, come out come out wherever you are!” Still nothing. I tried reaching for my water cup and fell into the pan.

My nurse appeared, “don’t worry sweetie, your bladder is just waking up from a long sleep, we’ll try again tomorrow.”

She helped me lie down and inserted a new catheter. I asked her about her plans for the next couple of days since I knew she was off. “I’m heading over to Buffalo with my sister to hit the holiday sales at Macy’s.” “That sounds like fun!” I said enthusiastically. I loved my nurse, I loved all of my nurses – they were like athletic shoe-wearing angels tending to me with care and quiet confidence.

“I’ll see about your pain meds” she said, as she handed me a damp towel for my sweating brow.

After five weeks in the hospital – and no peeing on my own – I was transferred to a Rehab Hospital to work on regaining strength, gaining weight and learning to walk again. My left femoral nerve had conked out during surgery, (from being splayed out for so long on the operating table) and I had awoken to find that I couldn’t move my leg.

So, let’s recap: I couldn’t pee, I couldn’t poop – (waste was now coming out of my stomach into a bag, since my surgery had also included the bonus gift of an ileostomy) and I had a bum leg. For the love of God and all that is Holy, throw me a bone, any bone. This is too much.

The nurses at the rehab hospital were hardcore, they were like the Marine Corp of Nurses. They immediately took out my catheter and started “bladder training.” They seemed confident that I would be peeing in no time. I was instructed to try peeing on my own every two hours, so I would shuffle over to the bathroom using my walker, trying my best to avoid looking at myself in the mirror so as not to further depress myself. Sitting on the toilet with the sink water running, I would wait five minutes, then get up and do my haunted girl shuffle back to bed.

Bladder training required waiting six hours before being allowed to have a catheter inserted to void the urine. In between physiotherapy, sleeping and doing my laps around the floor, my bladder would fill up to the brim; it was horrible. At this point I was no longer on pain meds, but I would often sneak a Xanax from my private stash just so that I didn’t completely lose it.

The nurses were required to scan my bladder to see how much urine I was retaining before they were allowed to insert a catheter to drain me. A catheter, in this case a long rubbery one which looked like a hose, was lubed up then inserted into my urethra. The urine would then drain out into the brown organic pan, they called it doing an “in and out.”

Though the Marine Corp nurses were amazing, there was one whom I always dreaded having. She acted like it was my fault that I wasn’t peeing and she gave me major attitude over having to do in and outs. Instead of properly sterilizing my urethra, she would literally throw sterilized water from a far distance over my entire vaginal area. Then she would leave the room to go searching for a flashlight. Often she would attempt to put the catheter in, but instead she would jam it up the wrong hole. When she finished she would “tsk tsk” me under her breath. I knew this part of her job was a major drag, but what could I do? The universe was busy helping others and my bladder nerves had gone into hibernation.

At this point my cancer wasn’t even my main concern. All I could think about was the fact that I was a skeleton with thinning hair who couldn’t pee, poop or walk. Were it not for the support of my amazing partner, family & friends, I would surely have fallen into a pit of despair.

Then came the day when one of my favorite nurses dropped a bomb: “you’ll be going home very soon and your bladder nerves are still not working. So today I’m going to start teaching you how to do your own in and outs.” Dear God, have mercy on me please.

Thus began a brief chapter in my life called “Finding Urethra.” Because if you want to drain your urine, you first need to find the hole that it comes out of. And by hole, I mean a really tiny, almost imperceptible slit that is kind of hidden by the rest of the female bits. Maybe I’m in the minority or I missed a crucial health class back in high school, but I honestly didn’t really understand where the urethra was. So I used a mirror to watch the nurse and at night, under my blankets, I examined myself by the light of my cellphone.

I had an irrational fear of doing the procedure on my own. It’s like all my anxiety about having cancer was projected onto this one procedure and I couldn’t imagine that I would ever master the skill. I envisioned myself at home, swollen like a balloon with unreleased urine, until one day I just exploded, spraying pee everywhere.

But like anything in life, when your back is against the wall and you have no other options, you figure things out. One day, having finally located my elusive urethra, I successfully performed my own in and out! I basked in the glory of the moment, telling everyone on my floor my good news. I celebrated by eating an extra cup of ice cream (side note: the little hospital ice cream cups are, unlike all other hospital food, strangely delicious).

A few days later I was discharged from the hospital with a supply of tiny, clear catheters, lube, a giant splint on my leg, a walker, crutches and a cane. It would be six more months until my bladder woke up. Then, one day, while sitting on the toilet, I suddenly heard a beautiful noise – the swoosh of urine! The universe had finally granted me my wish.

Author’s Note:
My bladder nerves only partially woke up; I still have to self-catheterize twice a day. This is what the little catheters, aka, pee sticks, look like:

Since the day my oncologist diagnosed me with a rare, incurable cancer, one for which long-term survival is considered five years, I have become obsessed with getting rid of my belongings.

It’s not that I’m into Minimalist Living, the trendy lifestyle of the moment, because I’m a proud Maximalist. Nor am I following the advice of best selling author Marie Kondo, whose book “The Life-Changing Magic of Tidying Up,” advocates purging everything which does not bring us joy. Most of Kondo’s system just doesn’t work for me. I tried following her strict rules, but halfway through folding my socks so that they stood upright like mini soldiers in my drawer, I lost my freaking mind. I started dressing up my, (now deceased dog), Leroy, in my old sweaters:

I have so many lovely things (most of them not practical – that’s my specialty) and each piece brings me joy. Therefore I should keep them all, right? I’ve never heard anyone say: “I want less joy in my life please.” Note: I am not an actual hoarder. As part of a volunteer job I used to visit an elderly woman who was a true hoarder, so I know what that chaos looks like; I’m just a collector of pretty things.

The kind of de-cluttering and purging that I engage in, is fueled by my deep anxiety that I will die soon and that my partner with be stuck with all of my stuff. He will be devastated (his word) and in addition to processing his own grief and dealing with my family, (they love him deeply and consider him their son-in-law), he will have to go through all of my belongings. Having never had to be in charge of such a depressing task, I can only imagine how difficult it would be. I see my compulsive de-cluttering as preparation for my death and as something that will make my partner’s life a little bit easier down the road.

Of course the deeper truth here is my desperate need to control something, anything. I can’t control my cancer. I can’t control how my body reacts to cancer treatments. I can’t control the myriad of complications that arise. But I can control how much stuff I leave behind and that makes me feel less powerless.

So I continue my regular mini-purges. I keep most of my vintage items, like Pulp Fiction books with wonderful cover art, my hoop earrings circa 1980’s high school years, my pink rotary telephone…

But I’ve given well over half my wardrobe to charity. Since I now have to wear an ileostomy bag, most of my fitted clothes no longer work, so I’ve freed them from their closet shackles so they can now bring joy to other women: women who are suffering in unimaginable ways – fleeing abusive partners, struggling to put food on the table for their kids, trying to kick drug addictions…These women deserve every little spark of joy that I can give them.

Gifts were initially harder for me to part with because of the guilt I felt and I must give credit to Marie Kondo for helping me with this issue. She encourages people to let go of unwanted gifts – with love, gratitude and blessings (or something like that) – and allow others the chance to experience joy.

In my case many of my unwanted gifts were jewelry items. My partner is not a jewelry gift giver, so that wasn’t a problem. And I kept some gifts that had sentimental value: an amber stone ring that my youngest brother gave me, my paternal grandmother’s wedding ring, a beaded Goddess necklace that my best friend gave me twenty-five years ago…But all the other jewelry that I had never worn, I cleaned, then bought individual decorative boxes to put them in before dropping them off at a women’s shelter; they would make beautiful birthday and holiday gifts. By helping another woman feel special, I was also – selfishly – helping myself. For each gift that I gave away I felt my spirits lift. It was as if each box contained a magic potion that wafted out and enveloped me, making me feel, (at least temporarily), very happy.

My partner is weary of my de-cluttering compulsion, I think it makes him a bit uncomfortable; it seems a tad ghoulish. He’s also concerned that I might get rid of something that has sentimental value to him, so I’m very careful and mindful of his feelings.

In the end it’s my cancer journey (though I abhor that expression) and if getting rid of stuff that I have no love or use for helps me cope, then I’m going to continue. Who knows, maybe one day I’ll become a Minimalist.

It was my first time trying on skinny jeans and I was excited. My legs are stocky, inherited from my mom’s side of the family who were all strong Irish farmers. As a teenager I had yearned for my dad’s long, pole-style legs and had even asked my parents if I could get my legs stretched (I had read somewhere that a lengthening machine existed).

At forty-six years old I had long ago accepted by body, but when I slipped into a pair of size 24 skinny jeans and saw my legs looking strangely slim, suddenly my insecure teenage self reappeared and she was ecstatic. Yet the reason they looked slender was because I had lost weight due to cancer. I was newly diagnosed with Peritoneal Mesothelioma, a rare, incurable form of abdominal cancer and I was in denial. “I’ll take them,” I told the shopgirl. And though I’m ashamed to admit it, for the next few weeks I actually liked how I looked. How sick is that? Speaking of sick, during this same period I did not feel well: I had difficulty eating, major nausea and twice daily panic attacks where I felt like my throat was closing.

My cancer “de-bulking” surgery was eight hours long and included the removal of my reproductive organs, a section of my small intestine and my primary tumour which I had named Maude. It also included a treatment called HIPEC, which is essentially hot chemotherapy poured directly into the abdomen while the patient is still on the operating table, aka a chemo bath.

After several days in the ICU, I was moved to the step-down unit. It was there, ablaze with pain and high on narcotics, that I made a decision: I had suffered enough. I would run away from the hospital and fly to Oregon where I had read they had passed legislation that allowed patients to “die with dignity.” But such an escape would be impossible without my skinny jeans.

“I need my clothes,” I whispered in a raspy voice to my partner. Not wanting to upset me, but suspicious of my intentions, he retrieved my hospital bag and put it next to me on the bed. I pawed at it in a drugged-out frenzy, then passed out.

I awoke to a large tiger staring at me from across the room. And someone had brought their dog to work: “I can’t believe they let animals in the hospital!” I said to myself, horrified. My great escape would have to wait, the hospital needed me; I had to keep watch over the creatures infiltrating the building.

Also, I had a new friend whom I had become very attached to and I didn’t want to leave her. A nurse’s assistant had been placed in my room to guard me, since in my delusional state I had made several attempts to get out of bed (while attached to multiple tubes and monitors). Not understanding that she was there to keep an eye on my crazy self, I thought I had my own private nurse-friend and I adored her.

Due to a myriad of complications, I spent two months in two different hospitals. At the second one, a rehab hospital, the nurse weighed me: the scale read 94 pounds, I usually weigh 120. I had lost a great deal of muscle mass; my legs were emaciated, atrophied sticks and my bum was pancake-flat. I avoided looking at myself in the mirror, it was too upsetting. I begged God to help me gain back the weight, promising never to complain about my thick legs again.

In retrospect I think my early fixation on my legs was simply my way of avoiding the intense emotions that were surfacing. I was scared of dying, who wouldn’t be? But what really troubled me was the idea of hurting those I loved. I was blessed with a partner, family, friends and a one-eyed elderly street dog who all loved me. I didn’t want to cause them pain.

Now, two and a half years later, I am back up to 120 pounds and I’m as stocky as ever. I am extremely lucky to be alive, many people with Mesothelioma don’t live more than a year after diagnosis. And though I’m grateful, I’m also aware that I’m living on borrowed time. So now I wear skinny jeans as often as possible. It’s my way of giving cancer the middle finger.

The famous skinny jeans try-on at ShopGirls on Queen West in Toronto. I had already lost ten pounds here and little did I know that I would lose 20 more…

Tonight I’m off to get an MRI and MRA to check on the status of my brain aneurysm – whoop! One year ago a surgeon filled my brain with platinum, (the procedure is called “coiling”), in order to keep my aneurysm from bursting – eek! I was actually very lucky because when I was in the hospital for cancer treatment my doctors accidentally stumbled upon my aneurysm while scanning my body. Who said cancer doesn’t have a silver lining?!

I always come prepared to these scans with a pocketful of pills. Lying in an enclosed, small space for 45 minutes while the MRI machine pounds you with loud noises – which sound like punk rock combined with power tools – is not ideal for anxious types like myself. Six months ago at my last brain scan, several poor souls in the waiting room started to freak out with nervousness. The nurse told them that they should have asked their doctors for a sedative before coming to their appointment – nice! I was tempted to share my stash with them, but since I’m not completely insane I didn’t. Personally I think the waiting room should come equipped with a Chill Pill dispenser. The pills, or “dolls” as I like to call them (watch “Valley of The Dolls” if you haven’t already), could be kept in this fabulous canister by Jonathan Adler: